Monday, October 26, 2020

Week 375: New York state of mind

 We have been unbelievably fortunate these last few weeks to have an out of town visitor, namely Uncle Jared, who went absolutely above and beyond to come here safely to visit during these insane times. He flew to WI from New York, quarantined for a week, took a COVID test, which was negative, visited with all of us for a couple of weeks, and then left again on Sunday morning to go home and quarantine for a further two weeks before reuniting with Auntie Lauren and the rest of his regularly scheduled life there. The kids were absolutely thrilled to see him, and had a blast playing with him and showing him all of their new skills. We feel so fortunate that he was able to come, and so sad to think how long it will be before we can see him again.

Pandemic life continues to rumble along. We are getting a little taste of what winter will be like, with the days getting colder and darker, and our first dusting of snow. The kids are getting a little less willing to go play outdoors, and the feeling of impending cabin fever is real. At least our learning pod still seems to be working well, the kids do seem to be acquiring new knowledge, and at least they have their two school friends to interact with so it isn't just the two of them.

Other than that, we have switched Lemon over to the 3 cartons a night of formula. That seems to be going fine, I should have him get on the scale at some point just to check an see, but he still looks plenty hefty to my eye. The only strange thing about it is that after years of conditioning I am so programmed to wake up at 2:30 a.m. to turn off the pump that when it goes off at its new time of 12:30 it wakes me from a dead sleep, and I still wake up at 2:30 expecting to hear it. I'm sure my brain will retrain itself eventually. We also switched Lemon to his new dose of ursodiol, and now I'm figuring that as long as we haven't had the labs drawn yet anyhow, I am going to let him go for a few weeks at the new dose and then bring him in for the blood draw, so we can see if the new dose is sufficient to keep the liver enzymes where they need to be.

Meanwhile I am trying to rekindle some of my indoor hobbies so that I have a chance of staying sane over the winter. I started doing origami again, and I baked my first-ever traditional fruitcake, which I am now "feeding" with brandy twice a week. Kind of like a very tasty-smelling houseplant. I hope you all are well and are likewise finding ways to fend of the impending doldrums of winter. Hang in there!







Monday, October 19, 2020

Week 374: Up close and personal

 Friday we had an epic visit to the CF clinic. I had debated whether or not to go in person, but Lemon expressed his preference that we go in person, and one of the doctors at the center gave us his opinion that it was safe to come in. So, at 11 a.m. we arrived for a long day of visits. We began with the new GI doctor. We had been transferred from the former GI doctor to this new one, who joined our hospital as a specialist in kids with liver disease arising from other complex health conditions, like CF. She took a detailed history, did a careful physical exam, ordered a bunch of labs, and adjusted Lemon's dose of ursodiol a little bit. 

Next, we did the throat culture and pulmonary function testing, both of which Lemon handled with great aplomb. He was actually very excited to do the PFT's, because he remembered the little games that the setup uses to coax kids into breathing out as hard as they possibly can. He did reasonably well, his technique could still use some improvement, but he is only 7. 

Then, we saw the CF doctor, who thought Lemon looked great. He, the dietitian, and I agreed that (drumroll please) Lemon was ready to decrease the amount of formula in his nightly tube feeds from 4 cartons of formula down to 3. I never would have guessed that I would be even contemplating making such a change, and with winter around the corner, no less, but Lemon is so big now and is eating so well that it seemed worth a try. We will of course keep a close eye on his weight and see how he does, we can always go back up if need be. 

After that, we met with the study coordinator and another CF doctor to talk about the new study that Lemon will participate in, and sign the consents. Lemon even signed his own name to a "child attestation" sheet--he is so grown up now! We're still waiting for a call back to schedule our first imaging visit, but that will probably happen sometime next month.

Unfortunately after all that was done we did not have time to go to the lab to get blood drawn for the new set of liver labs, because we had to rush over to a different building a few miles away so Lemon could have his Fibroscan, which is an ultrasound-based measurement of liver elasticity. The new GI doc thinks it is the best tool for monitoring his liver going forward, and she was the one who actually pushed our hospital to get the machine. The results said basically the same thing as his previous ultrasound, which is that his liver is currently in good shape, so this reading will be our baseline going forward. We'll have repeated measurements annually to see how things go.

So, a huge day but we got a lot done, and didn't get home until almost 3pm. I'm glad we went in person because one thing the CF doctor told us is that the hospital is going to dramatically cut back on in-person visits, switching everything they can to telehealth throughout the winter. So, we basically got in under the wire in terms of actually seeing anyone, and probably won't see anyone in person again until 6 months from now. The research study is apparently going to proceed, though, so we may venture back off our property for that. 

Meanwhile, everything else continues to more or less rumble along. This week, I thought I'd feature a guest photographer on the blog, our pandemic pod's in-person teacher extraordinaire, who also happens to be a very talented photographer--a nice change of pace from all the cellphone snapshots!




Monday, October 12, 2020

Week 373: Xenon

Just to fill you in on the exciting conclusion of the flu shot saga: everyone in my house is now vaccinated! Lemon got his shot on Wednesday at the children's hospital, and it was an amazingly smooth experience. We went at our appointed time (Lemon didn't even protest going to dramatically), we zipped in, there was no one there except us, Lemon sat like a statue and didn't even flinch when he was given the shot, and we came home. Who is this child? Then, on Sunday, I took Lime to get his. Although I am still annoyed that I had to drive across town to do it, it likewise was very smooth, very few people there, and Lime was just as stoic as Lemon was. It is almost like these children have grown up since the time that I took them both to get flu shots together a few years ago, when they both were little enough to have to get the shots in their legs and to wail like banshees for many delightful minutes afterwards.

Another exciting update is that Lemon was invited to participate in new clinical research study where his lungs will be imaged by MRI. I of course said yes immediately when it was offered to us, partly because I always say yes to research if we can possibly do it, but because I am so convinced that better lung imaging and diagnostics are absolutely critical for CF care. X-ray just doesn't cut it. The doctor who recruited us in fact himself brought up how it was Lemon's participation in a previous study (involving a chest CT) that allowed us to catch the issue in his right lung back in the before times.

The most exciting aspect of this particular research project is that it has two parts. The first part is now. And the second part is later, after Lemon starts Trikafta! As in, it is such a given that he will get it soon that this whole research study is planned around that fact! The doctor said the approval might even come through by the end of this year. YOU GUYS! THE END OF THIS YEAR!!! Ok, the year in question is 2020, so I will try not to get my hopes up too much. But, YOU GUYS! THE END OF THIS YEAR!!!

Ahem. As I'd said last week, I'd been on the fence about taking Lemon in to the clinic for his appointments on Friday, due to the COVID situation in Wisconsin still being absolutely terrible. But, the doctor said he felt it would be safe for us to come, our county is in somewhat better shape than other parts of the state, and the hospital is of course being fanatical about infection control. I asked Lemon what he would prefer, and he said that he would prefer to go in person, since his doctor couldn't get the video conferencing to work well last time (true). So, between that and the fact that we need to be there in person to do the consent for this new research study, I guess we're going in. Honestly I think we are due for an in-person visit, it has been over 6 months since any medical person actually physically examined Lemon, a lifetime record for him. 

Oh and it was my birthday and our 10th wedding anniversary. I knew something else was going on this week. Thanks to all of you for reaching out, it was great to hear from everyone and we did manage to make the weekend special despite the extraordinary times.








Monday, October 5, 2020

Week 372: Stainless steel

 Just when you think there is no way the world could get more nuts than it was before, 2020 finds a way. I don't even know what to say anymore, other than as the parent of someone with CF, it is almost unbearable to watch people who were given the gift of healthy lungs to be so utterly cavalier about a virus that could forever compromise them and those around them. I am guessing the audience of this particular blog does not need any admonishment to wear masks, to stay distant, and to avoid unnecessary contact with others, but please be careful. Not everyone is, so those of us who are must be doubly so.

Other than the obvious, it was another fairly peaceful week in our tiny patch of Wisconsin. The only great tragedy, such as it was, is that Lime knocked over the mortar and pestle that I have been using for years to grind the enzymes for Lemon's nightly tube feeds, and the pestle broke. I decided to adopt the same coping strategy as I used when the butter dish met a similar fate years ago, and replace something ceramic with something made of stainless steel. And I have to be honest, the stainless steel one is actually a big improvement, so Lime did me a favor in the end, it is much easier and faster to grind the capsules with this one than its predecessor. 

Virtual school continues to roll along. The novelty has definitely worn off, but the kids still seem to be reasonably engaged and happy. We haven't received any kind of formal announcement from the school district yet about what will be happening as of the beginning of November, but given the current state of affairs in WI, I will be shocked if they do anything other than remain fully virtual through the end of the calendar year.

Lemon is scheduled for his flu shot this coming Wednesday, and is supposed to have a clinic visit and an appointment with the new GI doc next Friday. I'm keeping the appointment for the flu shot, but I am thinking that I will switch the clinic visit and the GI doc to telehealth visits instead of in person. When we made the appointments, it seemed like it might be reasonable to go in, but in the current circumstances I don't think it is worth the risk. Lemon is supposed to get a new scan of his liver, which obviously has to happen in person, but I am feeling like that can wait, too. His liver enzymes were good on his most recent bloodwork, and while I know it is important to get a good baseline measurement while he is young, is another 6 months going to matter that much? Probably not. We'll see what the doctor thinks. 










Monday, September 28, 2020

Week 371: Immune

 Well, flu season is around the corner. So, it is time to remind everyone to get their flu shots. Get your flu shot! Yes, you, even if you are doing social distancing and masking and all that. I, like many others I am sure, received automated messages from our healthcare providers with more or less that message. And, being a conscientious CF parent, as soon as the message came in, I got on the phone to the kids' pediatrician's office to schedule them. I gave their last name, their first names, their birth dates, confirmed my address, my phone number, etc etc. And then the scheduler paused as she scrolled through the calendar. And paused some more. And then said, "You're not going to like this. The first date I can do both kids is December 3rd. Otherwise, you can go to the online system and schedule them there." 

She was certainly correct that I had no intention of waiting til December 3rd for flu shots (which their own email says I am supposed to get as soon as possible). Unfortunately, for our kids, "as soon as possible" appears to mean two separate days during the second week of October, at two different clinics, one near our house and one across town. Because obviously that makes complete sense and is very convenient. I have to tell you, this experience does not fill me with tremendous hope for any forthcoming mass-vaccination efforts that may involve two shots given some number of weeks apart.

In other news, Lemon was having some trouble with his vest during his treatment this morning, it wouldn't stay in quite the right position. When I was called in to see what the matter was, it became obvious immediately that he had completely outgrown it! Not that this should be a surprise, since all his favorite T-shirts are also too short and too tight, but it is kind of impressive that we failed to notice him outgrowing his vest so completely. So, this morning I got on the phone with the good people of Respirtech and a new one the next size up should be arriving soon. Now if only the new compressor for his nebulized meds that I'd ordered 3 months ago and that was back-ordered "6 weeks" would ever show up, we'd really be in business.

Other than that, virtual school continues to roll along. I got an absurd email from the school district last week noting that the first quarter is done sometime next month (what?!?) and wanting me to express my preference for fully virtual vs. hybrid for the next quarter. Excuse me, I'm sure you had the email drafted weeks ago, but have you noticed how there is an epidemic literally raging out of control in our state right now? My preference (which is to remain fully virtual anyhow) is totally irrelevant! There is no way the schools can open for the second quarter no matter what anyone wants. Anyhow. Please stay safe, everybody. The next few months will not be easy.





 

Monday, September 21, 2020

Week 370: Notorious

 The outside world appears to be doing its best to encroach upon our little plot here in Madison, what with the pandemic raging unchecked in our state plus the endless stream of political crises and scandals. Nonetheless, we are doing our best to keep things vaguely normal-seeming for the kids, who obviously know about the virus but remain fairly oblivious to the machinations of the institution heretofore known as "the world's greatest deliberative body." 

Virtual school has entered its third week, and with that the teachers seem to have decided that it is time to increase the expectations on the kids, who were perfectly fine with the previous expectation level and were totally exhausted today after being pressed to finish assignment after assignment. Hopefully after a couple of days they will get used to the new workload, although part of me shares their wish that the teachers had just stuck with what they were doing last week and let the kids have a bit more fun during the day. On the one hand, I see the benefit of keeping them occupied (and hopefully learning) for more hours per day. And on the other hand, they're so happy running around outside. It's hard to spend all day in the basement in front of a computer, as Papa Bear and I can readily attest.

A definite benefit of being home all the time is Lemon's continued weight gain. He is almost 65lb now, which seems impossible given how long we struggled to reach 50. We have a clinic visit coming up in a few weeks, and I think to my amazement I am going to raise the topic of further cutting back on his tube feeds. He is eating so much by mouth now, and I really want to give him the space while he is home to learn how to keep up with more of his caloric needs by eating. He is interested in some day not having the tube anymore, so any progress we can make towards that goal will be exciting for him.

Other than that, we continue to try to make the best of our largely home-based life. Mud, rocks, cooking, baking, coloring, reading, and wondering what all this will feel like when the temperature drops and the number of hours of daylight falls. Papa Bear recently bought a Nintendo Switch ("for the kids") so they have been enjoying that and I suspect will get a lot of use out of it once winter comes. Anything to make life a little more interesting and fun, I suppose, as long as I am not expected to while away my own winter playing Mario Kart!







Monday, September 14, 2020

Week 369: Remotely

 We officially survived the first week of remote school. And, now that it is in the past and I can't jinx anything, I am pleased to say that it went as well as I could possibly have hoped for. All the kids showed up, the teacher showed up, our enhanced internet was sufficient to support 4 different Zoom meetings at the same time, and despite the fact that it rained all day every day, no one lost their mind. Now I just hope that we can sustain this setup throughout the school year, but that goal feels infinitely more possible knowing that we did manage to do it for a week. I am impressed with the teacher, she is very calm and manages to keep the kids pretty focused on their work. My office is just a few steps away from the school room, with no intervening door, and I almost never hear the kids during the day. And, knowing what just my own two kids usually sound like during the day, that is really saying something.

I wish I could say that the situation outside our home was as hopeful as the situation inside it, but alas that is not the case. The COVID-19 situation in Wisconsin generally and the Madison area specifically is not looking too great at the moment, with case counts continuing to climb, largely among students and staff at the university. So, we are all on heightened alert and doing our best to minimize our contact with the outside world. Recreational activities have included "walking up a small hill and looking at nearby water towers" and "attempting to make a fire and then poking it with a stick." But, staying safe is the most important thing.

Even as someone who has now been working remotely for 5 years, I am feeling the increased level of remoteness in my life. Last week, I ran the remote Boston marathon, during which I saw a total of maybe 5 other humans along my early morning path west from my house. Yesterday, I met with my book group over Zoom. I'm taking a course this semester, which is also online only. So, more and more  I feel like I am connected to the outside world only through technology. As the weather begins to feel more and more like fall, I worry a bit about what winter will be like. It is hard to imagine anyone becoming more reconnected with the outside world during that time. Stay strong everyone, and we will see you as soon as we can.